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Empowering people with disabilities to live an incredible ordinary life.
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Thursday Jan 31, 2019
Thursday Jan 31, 2019
Here is the secret.... it is to start with developing valued roles. What is a valued role? A valued roles is the answer you give to the question 'What do you do?' when you meet someone new. [more on valued roles below] Guest Genia Sthphen also shares her story as a sibling, a mother to two sons, and how she has helped to create the good life for her son Will.
Professionally, Genia is a midwife to many, and an activist with a mission to band together with families to joyfully pursue the good things in life. She recently launched the Good Things in Life, which is an online community for young families who share a vision of the good life for their kids with disabilities.
You can listen to this conversation in its entirety by clicking play on the player below, OR by clicking one of the following links to listen on your favourite podcast player; iTunes, Spotify, and Google Play.
Growing Up With a Sibling that has a Developmental Disability (DD)
Genia is the 3rd of 4 daughters, and her younger sister Kate has a DD. Genia’s two older sisters are a fair amount older, and it was really just the two of them (Kate & Genia) when they were growing up.
Genia remembers going to appointments with Kate where they had Kate do silly things, like hold onto the pencil, and they would pull on it until she let it go. Kate didn’t care much for holding onto the pencil and as a result, was diagnosed with having poor muscle tone. But, Genia and Kate thought it was funny because Kate would drag Genia around the house on her back by her toes.
Genia recalls, “At 5 mom sat me down on her lap and told me that Kate had a disability. Mom was serious, it was an occasion, She explained Kate would learn more slowly than other kids. I responded by crying. I was trying to figure out what was expected in this situation, and it was clear to her that the appropriate response was to be sad.”
It was a big deal for Genia’s mom. She had never experienced someone with a disability, Her mom was terrified, intimidated, and overwhelmed. It was something worth crying about for her.
Genia’s mom reached out and started to connect with other parents and other people that knew more than she did. She surrounded herself with this community and exploded into a powerful advocate. She stopped delivering the information in a way that elicited sadness and started having really high expectations. She had connected with some people that had worked with Dr. Wolf Wolfensberger, who developed the social theory of Social Role Valorization (SRV).
Genia attended her first SRV workshop at 15. It taught her language, and how the world works for people that are devalued.
Key Insight: Connecting with other families is important. Not just getting connected, but who you get connected with. What are their beliefs and mindsets? How you deal with grief and fear is guided by your mindsets and fear for a person with a disability.
When Genia’s second son Will was born he was very very sick. Genia recalls, "we weren’t sure he was going to make it. They were telling the family that he would have significant disabilities." Genia’s response was “Well yeah yeah yeah, but is he going to make it, let's focus on what matters here. And he did [make it!].”
What is Social Role Valorization (SRV)?
GS: “SRV is the universal ways that people are devalued in society. Devalued people are not able to access the good things in life the way that valued people are. For example, devalued people do not have the same opportunities for personal growth, education, meaningful work, freely given relationships, pursuing their interests. People access the good things in life through the roles we play in society. It is also how we connect and understand each other. One of the first questions we ask someone is “what do you do?”. It helps us understand and relate to each other through roles.”
There is No Risk-Free Path
GS: “If your major fear is that someone is going to be hurt or rejected, and the way that you prevent that is by keeping people protected and isolated from the people that might hurt them, then that leads you down a vision that likely includes a lot of services and people paid to keep the person safe.
Alternatively, if your mindsets and beliefs are that safety for vulnerable people comes through relationships, this leads you down a path of life in the community.
There is no risk-free path.”
What Does The Good Life Look Like for Will?
Listen to the podcast to hear how Genia’s family has thought about the role of student for Will. Genia and her family thought through the things that were likely to increase people’s high expectation and positive image of Will in the role of student, starting from the age of 2!
GS: “Will is now 12, and we think about for his peer group what are the typical valued social roles that a person holds? And, what are the kinds of opportunities that those roles bring? Then we pursue those things.”
Want proof!?! Watch the video below.
Video: Will Enjoying The Good Things In Life
Key Insight: Look to what is typical for people that don’t have a disability at that stage of life and focus on the roles the individual could hold to create your vision. Additionally, the person supporting needs to understand the social role and also have the social currency to help them get there.
In this podcast, Genia and I also cover topics including raising the consciousness of devaluation in our society, the experience of being a mother with a child that has a disability, and what the experience of having a sibling with a disability.
Tweet-able Moments from the conversation with Genia Stephen:
"Devalued people are not able to access the good things in life the way that valued people are. For example, devalued people do not have the same opportunities for personal growth, education, meaningful work, freely given relationships, pursuing their interests."
"...if your mindsets and beliefs are that safety for vulnerable people comes through relationships, this leads you down a path of life in the community."
"Look to what is typical for people that don’t have a disability at that stage of life and focus on the roles the individual could hold to create your vision."
If you received value from reading this blog or listening to this podcast episode I encourage you to share it with someone else you feel would benefit.
The Empowering Ability Podcast and Blog are made possible entirely by you, the support of listeners and readers. Thank you for considering a contribution to this work with a subscription!
Love & Respect,
Eric Goll
Resources:
Will Social Media: Theadventuresofwill.ca
The Good Things in Life --> For Parents of young children with IDDs. Goodthingsinlife.org.
Contact Genia by email: Genia@goodthingsinlife.org
Creating Valued Roles with Janet Klees: Click Here
Too Busy to listen to the podcast now? Listen on the GO!
The Empowering Ability Podcast is available on iTunes and all other major podcast apps so that you can listen while on the go from your smartphone!
Wednesday Jan 09, 2019
Wednesday Jan 09, 2019
Yvonne defines grief, how to support others that are grieving, and shares her 7 takeaways to navigate through life, grief, and end of life.
In this episode of the Empowering Ability podcast, we have an in-depth conversation on grief with nurse and author, Yvonne Health. In this conversation, Yvonne defines grief, how to support others that are grieving, the difference between quality and quantity of life, and her 7 takeaways to navigate through life, grief, and end of life. Yvonne is an inspirational Speaker, author of the book ‘Love Your Life to Death’, and a TV and Radio host.
(Note: 25% of 'Love Your Life to Death' book sales purchased through this link go directly to Community Living Ontario)
You can listen to this conversation in its entirety by clicking play on the player below, OR by clicking one of the following links to listen on your favourite podcast player; iTunes, Spotify, and Google Play.
Why Are We Talking About Grief?
YH: “I didn’t choose this, it chose me. Looking back at a 27-year nursing career we don’t talk about grief, we don’t talk about death and dying until it arrives. Then we try and navigate through it. This causes excessive suffering. Grief is a part of our journey, but by avoiding it we are creating excessive suffering.”
Seeing this suffering as a nurse Yvonne had to do something about it, so she took a leap of faith wrote a book about it, and here we are.
As as a nurse, Yvonne became attached to people and she suffered tremendously. She realized this and she became aware of how she was suffering and became curious about it. This led her to have more conversations with other carers.
YH: “I asked fellow caregivers, are we well prepared for grief death and dying? And they said, no. Then I’d have conversations with two people with the same diagnosis of terminal cancer and their families and see drastically different experiences. One family was acknowledging and allowing all feelings - laughing and crying and being open, and being truthful about what was happening. That person died more peacefully and the family navigated through their grief and was able to get through and find happiness again. Then there were other families who were angry and bitter, and demanding more treatments and there weren’t conversations being had. There was no eye contact, I could feel the suffering. I could see this over and over, and I had this inner voice telling me we had to see something different.”
What is Grief?
YH: "Grief is whatever makes your heartache. Often it is death, but it can be divorce, a diagnosis, complications at birth, job loss, not making the team. Grief is a part of our life. Anger is often a very big part of grief, and it can come out."
How Do We Support Someone Experiencing Grief?
YH: “I [we often] don’t know what to do, I [we often] don’t know what to say. We are more comfortable avoiding people when they are grieving. But the most important thing is that we need people to just show up. A hug, a text, an email, sit in silence. Just sit with someone and acknowledge and allow their feelings and not try and fix it. You can’t fix grief, you just have to allow it. We have to get back to allowing our humanness. You are qualified to just show up.”
Quality of Life vs. Quantity of Life.
YH: “What is enough quality of life is enough for one person isn’t acceptable for another person. There is always a treatment that we can do, but the question is should we? Wouldn’t it be wonderful if we have the conversation before something happens? The time to have these conversations is not when you are facing life or death situations.”
EG: “We can create a thought experiment for ourselves and think - okay if I got cancer and I was given a prognosis of 2 years to live with intensive treatment that is going to reduce my quality of life for that time, or I could have 6 months to live with a high quality of life. Which would I choose? And, you can do this now from a rational place now, rather than a fear-based place when actually faced with the decision. This decision will likely also change over time as we age, or our life situation changes.”
YH: “These types of situations being made when things happen can fracture families, and create divides that are difficult to repair. Let’s normalize creating an end of life plan. Imagine the suffering that we can alleviate.”
EG: “Only 50% of people have a will. Get your will in order. This is especially important for a family where there is a person with a disability because any transfer of your estate to a person with a disability can drastically impact their social assistance benefits.”
Yvonne’s 7 takeaways to navigate through life, grief, and end of life
1. The Next Best Time is Now! The best time to talk about, plan and prepare for grief is when we are young and healthy.
2. It Takes a Village to support: the ill, the caregiver, the dying, the bereaved and each other.
3. When someone is grieving, Just Show Up!
4. To be empowered, resilient and compassionate, Show Up For Yourself First!
5. Structure Your Life in such a way that you are self-reliant.
6. Find your Post, and hold onto it.
7. What will Your Legacy be?
To get the summary description of Yvonne’s 7 takeaways go to http://the7takeaways.ca/ to learn more, or you can listen to us discuss these 7 takeaways on the podcast by clicking below.
Tweet-able Moments from the conversation with Yvonne:
“Love & gratitude are the answer, no matter the question.” - Yvonne's mother, Waves of healing
“Our legacy is what we create in every moment of every day. It is how we make people feel.” -Yvonne Heath
“It [life] isn’t joy or sorrow, it Is is a rollercoaster, and when we take care of each other we can get through it [life] with greater joy.” -Yvonne Heath
If you received value from reading this blog or listening to this podcast episode I encourage you to share it with someone else you feel would benefit.
The Empowering Ability Podcast and Blog are made possible entirely by you, the support of listeners and readers. Thank you for considering a contribution to this work with a subscription!
Love & Respect,
Eric Goll
Resources:
Yvonne's Blog/ vlog
Book: Love Your Life to Death
(Note: 25% of 'Love Your Life to Death' book sales purchased through this link go directly to Community Living Ontario)
Listen on the GO!
The Empowering Ability Podcast is available on iTunes and all other major podcast apps so that you can listen while on the go from your smartphone!
Thursday Aug 23, 2018
Thursday Aug 23, 2018
Dr. Yona Lunsky discusses state of mental health and developmental disability, how to notice mental health challenges, and different treatments.
In this episode, I welcome Dr. Yona Lunsky on to the podcast to talk about developmental disability (DD) and Mental Health. Dr. Yona Lunsky is Director of the Azriei Centre for Adult Neurodevelopmental Disabilities and Mental Health, and Director of the Health Care Access Research and Developmental Disabilities (H-CARDD) Program at CAMH. She is Professor and Developmental Disabilities Lead in the Department of Psychiatry at the University of Toronto and Adjunct Scientist at the Institute for Clinical Evaluative Sciences (ICES). In this episode we discuss Dr. Lunsky’s journey into the field of mental health and developmental disability (DD), the state of mental health in the developmental disability community, how to notice mental health challenges, and the different treatment options available.
Below is a summary of some of the highlights from my conversation with Dr. Yona Lunsky. If you find this read interesting you can listen to the conversation in its entirety by clicking play on the player below, or searching ‘Empowering Ability’ on your podcast player, such as, Apple Podcasts, Spotify, Google Play.
On the podcast, Yona shares that she has an older sister who has a DD, and she tells us about her family experience. She also shares what led her down her career path to support people with developmental disabilities experiencing mental health challenges. Take a listen to the podcast to hear more of Yona’s Journey.
Why should we be talking about health in the Developmental Disability (DD) community?
Paraphrasing from the podcast, Yona shares, “When we are healthy we get to enjoy our lives. When we are unhealthy it restricts us; work, where we can live, how much money it costs day-to-day [living expenses], and the activities we can do. We know people with DDs are less healthy, and have more health problems than people that don’t have DDs. There are lots of reasons why they [People with a DD] are less healthy. It isn’t necessarily the disability, the disability itself is not a sickness, but how they manage their health, and the barriers that come up for people with DDs can impact their health.”
Mental Health in the DD community.
Yona shares, “The likelihood of having a mental illness is much greater for a person with a DD than without. In the general population 1 in 5 people experience mental health challenges. Through H-CARDD we looked at the number of people under 65 [years of age] with a DD that were given a psychiatric diagnosis over a two year period, and found it was 2 in 5 people. These problems are more common for people with DD, and they are less likely to get the help that they need. People with a DD are less likely to understand their emotions, and [are less likely] to be able to put language to it. This puts them at a disadvantage.”
What Does Dual Diagnosis Mean?
Having a DD and also having a mental health problem at the same time.
Diagnostic Overshaddowing
Yona explains, “If someone with a DD presents with symptoms of depression, the clinician might but look at the person and say oh that is your disability, and miss that the depression is actually there, and it may go untreated.”
Why might mental health be a larger challenge for people with a DD?
Yona explains, “What makes us feel healthy? Are we engaged in meaningful activities?, Do we have strong friendships?, Are we included?, Do we have opportunities to contribute?. People with DD are at a disadvantage here and this all impacts mental health. If the person themself can’t recognize there is a problem, then it becomes up to others to recognize there is a problem and we are worse at recognizing there is a problem when someone has a DD. By the time we do notice, it can be pretty late in the game, and this makes it even more difficult to help them.”
I ask, so what are the antidotes to poor mental health?
Yona shares first there are things we can do to prevent mental health challenges:
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Things like bullying are clearly related to mental health, and we can give people skills so they know that to do in these situations.
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Building positive social relationships. These are reciprocal relationships and they are not stressful or demanding too much of you.
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Doing things that are meaningful and important for you.
Yona explains the importance of taking action on these prevention steps for young adults with a DD, “There are many people who have mental health issues who are hospitalized in young adulthood. I don’t think this is a coincidence that this happens since when you finish school your activities, your friends and the people who know you really change. Not having anything to do during the day, and watching tv in the basement, losing friends, failing because there isn’t the right supports, all of this impacts your mental health.”
How do we help someone that might be experiencing a mental health challenge?
Yona shares, “Be a detective and notice what has changed. What is different now than before and be able to provide examples in daily life. It is important to notice the change, and it is easier to treat when there is a small mental health issue emerging.”
Yona promotes using the ‘HELP’ model when examining an individual’s mental health.
Yona explains the model on the podcast:
H - Health. First we need to look at what is going on in terms of health that could have changed. Is there a physical change? One thing that looks like depression is hypothyroidism, but this has nothing to do with depression. Constipation is one of the biggest issues leading to aggregation and discomfort for people with DD. And, this is often missed because the person might not be able to put the language to it.
E - Environment. What is going on in the environment? What are the supports and expectations right now? Are things stressful? Too demanding? Are people expecting too little? Is there a good match between her situation, and what she feels she is able to do? If the match is poor than address it.
L - Life Events. What has happened in the past that might be contributing to this issue? Bullying, ostracized, loss (experiencing grief), etc..
P - Psychiatric. Once health, environment, and life events are examined - could it be depression or anxiety? Treatment for these mental illnesses could include engaging in activity, seeing a counselor, medication, etc.
Families can use this model in order before going to get help from a medical provider, and families can use this model with their mental health professional.
Treatment with Medication:
Paraphrasing from the podcast Yona shares:
“The research shows that the likelihood of being prescribed several medications at the same time is not small [for people with a DD]. These medications interact with each other, and cause other problems. These medications can help, but they can also harm.
In Ontario Canada, medications are paid for (antidepressants, etc) under the disability program. But, other services such as psychotherapy are not covered. The likelihood of fulfilling prescriptions are high, and the most commonly prescribed drug to people with DD are not for cholesterol, diabetes, or asthma, they are for psychiatric issues. The most commonly prescribed drug are antipsychotics. These are pretty heavy duty drugs which require a lot of monitoring.
If doctor prescribed medication to me, I would go on the computer and look at it, get a print out from the pharmacy, I would look at the side effects, and tell the doctor right away if I was noticing any of them. [However,] people with DD aren’t always able to notice the side effects, or to understand why they are taking the medication.”
** Disclaimer: Do not just stop taking any medication that your doctor may have prescribed to you. Let this be a prompt to you to have a conversation with your doctor about your experience using your medication(s).
Let’s Talk About Mental Health
Yona’s final message is, “It is important to talk about it [mental health]. If we don’t talk about it we don’t solve anything by avoiding the problems. Mental health is just as important as any physical aspect of our health.”
On the podcast we discuss some practical ways on how to start the conversation on mental health. Take a listen!
If you received value from reading this blog or listening to this podcast episode, consider sharing it with someone else you feel would benefit. Coming soon there will be a way for you, or your organization, to contribute to this work. Stay tuned for the details.
Love & Respect,
Eric Goll
Resources:
- Talk to Dr. Yona Lunsky on Twitter @yonalunsky
- H-CARDD Health Tools for people with disabilities and caregivers
- More on The HELP model
- Dual diagnosis resources from CAMH
- A Family guide to dual diagnosis
- Video of Dr. Yona Lunsky discussing the HELP ideas
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Wednesday Jun 06, 2018
Wednesday Jun 06, 2018
Brian shares his story of multiple health challenges and family adversities, and his insights about how we can re-write our story and take control of our lives.
In this episode, I have an engaging conversation with life coach, Brian Raymond King. Throughout Brian’s life he’s been a student of adversity as he experienced multiple health diagnosis including; cancer, ADHD and MS – as well as going through a divorce, and being a single parent to three children with ADHD. Brian shares his story and his insights about how we can re-write our story and take control of our lives.
On the podcast Brian shares:
“It’s a matter of doing what you can with what you’ve got. In situations like mine, you don’t just give up on life and let it pass you by because you can’t do everything each day that you can do on your best day. Some people use their best day as their standard, but that is ridiculous because life ebbs and flows. Depending on where I’m at that day, I think about what can do and I show up and do 100% at it.”
How have you bounced back from each challenge in your life?
Paraphrasing from the podcast, Brain Shares:
“With each new diagnosis there is that oh crud moment. This is usually brief. But, grumping and groaning will not change the situation. Then I shift to what do I need to know? What resources are available? What books do I need to read so I can manage this? At some point being resourceful just stuck.”
What tools do we have in our toolkit to be resilient?
Paraphrasing from the podcast, Brain Shares:
“First off, there is noise that makes it difficult to use the tools [we have]. One of the most annoying offenders is the ‘shoulds’. It [life] should be this way, or it should be that way. Once we stop ‘should’ing’ all over ourselves, we can take the first step toward a solution. Maybe you don’t know what the solution is yet, but you can start problem solving.”
What about when the problem seems so bad, or too much to handle?
Brian asks his coaching clients, “Do you honestly believe that? Or, is that honestly true?”
Brian helps his clients think through if they want to be a victim of the situation or if they want to be resourceful and take charge by asking questions like:
“Do you want to be helpless or do you want to be in charge? What can you be in charge of right now? You can be in charge of your thoughts.”
In my coaching practice I often ask clients, “What assumption are you making?” This is a powerful question to help us realize the stories we are creating based on incomplete information. (Also, our assumptions tend to lean toward being negative.)
Mindset vs Skillsets:
Paraphrasing from the podcast, Brain Shares:
“You can have the best tools in the world [skillsets], but if you don’t believe in yourself [mindsets] you might not even want to use those tools [skillsets].
Brian believes we must first develop or mindsets, which is comprised of our belief systems to get the most from our skillsets.
I ask Brian, How do we develop our mindsets and beliefs?
Brian shares, “Studying biographies. Don’t just listen to what they did, it is important to look at the decisions that they made, and the beliefs they hold. It is their beliefs and thoughts that led to their results. Try adapting to that belief for just a day - I am going to act as though this belief is true, and I am going to see the world through this lens. For example, you are a much different person if you believe that people are good at heart, vs people are just out there to screw you over. Things are first created in the mind, then in the real world.”
Who is one of your most influential mentors?
Brian shares, “Victor Frankl, who wrote 'Man’s Search for Meaning'. You can choose your attitude no matter your circumstances, and each person has the internal power to find inner meaning in any situation. He gave me perspective on how much I was self-pitying. I decided how I was going to face how I was going to feel and how I was going to choose to think.”
On the podcast, Brian discusses the concept of Hacking your Resiliency. Take a listen to the podcast to hear these valuable insights.
Brian leaves us with a challenge to consider, “Whenever a problem shows up one question you can ask yourself is, ‘What’s good about this?’ When you ask this question you immediately begin seeing what opportunities are available to you because that problem exists.
A big thank you to Brian for joining me on the podcast and sharing his insights! You can learn how to connect with Brian in the resources section below.
Love & Respect,
Eric Goll
Resources:
Brian's Website: Mindsetbeforeskillset.com
Connect with Brian on Facebook
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Wednesday Sep 20, 2017
Wednesday Sep 20, 2017
Bill Hiltz shares his story of how he was mistreated and caged in an institution as a toddler, freed by loving people, and how he has grown into a leader advocating for positive change for people with disabilities.
In this podcast episode, I had the pleasure of interviewing ‘Team Bill’, including; Bill Hiltz, and his supporters Joyce Balaz and Arn Row. Bill is a disability advocate that is promoting positive change in the Ontario political arena by sharing what it is like to live in his shoes. Bill is non-verbal, and he is impacted by an uncontrolled seizure disorder that can rule his life.
Bill Hiltz’s Story
Paraphrasing from the Podcast Joyce and Arn share:
Joyce: “When Bill was born there were complications with the birth that led to Bill’s seizures. At the time, his family didn’t have the resources and supports to provide for Bill, and Bill went into foster care system at 1.5 years old. Bill went into a number of foster families, in and out of the hospital, and then ended up at Christopher Robin, which was an institution in Ajax, Ontario. The institution was closing when Bill was 8 years old, and a family who had already adopted another child came back to the institution and adopted Bill.
Arn: “It is important to share Bills experience in that institution. Bill’s time was mostly spent in a crib cage, which had 4 sides and a top on it. Bill wore a helmet because he was banging his head on the bars, which was Bill’s way of trying to tell whoever would listen that he didn’t want to be in there.”
Joyce: “When he was taken in by the family after the institution they just loved him to death, and he lived with them for 12 years (until he was 19). The father providing most of the care fell ill, as well the 3 (other) boys of the family where moving out of the home – so it was a time for transition (for Bill).”
Joyce, who was Bills educational assistant (EA) at school since the age of 13, heard that Bill was looking for a new home. Bill and Joyce gave living together a couple of trial runs and it went well. Bill then moved in with Joyce. Since then they have blazed a trail with their advocacy work, and growing and learning together.
(Left to right: Arn Row, Bill Hiltz, Joyce Balaz)
Start with the Assumption of Capability
When you see Bill you wouldn’t expect him to have done the things that he has done in his life. When Bill was in the institution as a toddler he was caged because he was misunderstood. Assumptions where made about his capability, or should I say incapability. Bill was shown love and respect by the family that adopted him, and since by Joyce, Arn, and many others. Bill’s story highlights the dangers of starting with the assumption that a person isn’t capable.
By assuming a person is NOT capable we keep them caged and deny the opportunity to live their best life. When we start with the assumption that a person IS capable, we give that person the opportunity to grow and live their best possible life.
What is the worst thing that can happen if we start with the assumption that someone is capable? They fail, and hopefully learn so they can be more successful in their next attempt. (Yes, it is important that we consider holding people capable in an environment that is safe for them so that if they do fail they have the opportunity to get back up and try again.)
Always start by holding people capable, disability or not!
Bill taught me this invaluable lesson. When I first met Bill I assumed that Bill wasn’t capable of having a conversation with me – and boy did he prove me wrong! Thank you, Bill.
We discuss holding people capable in more depth on the podcast.
Our Fear of ‘Different’
It took me well over 5 days of being around Bill before I actually engaged in a conversation with him. What took me so long to talk with Bill?
It was my own fear.
I judged Bill because I had perceived Bill as being different than me. This self-acknowledgement hit me square between the eyes. My sister has a disability, and I have several friends that have disabilities, and this fear was still present inside of me. What does this fear look like for others that have not had contact with people with visible disabilities like I have?
Joyce had a similar experience when first meeting Bill as an educational assistant (EA). Joyce shares, “…. I told the teacher that I didn’t want to work with Bill because I didn’t know how to work with him. The first time that I told Bill this he was mad, and didn’t talk to me for two weeks. Now that he has heard this story a number of times it has given him an opportunity to think about how other people view him.”
How is your fear holding you back from interacting with a person that you perceive as different? It could be a person with a disability, a person from a different ethnic background, or a different religion.
How Do We Best Communicate with Bill (and others that have a developmental disability):
In this episode, we discuss how it can be difficult to enter into a conversation with a person when there isn’t a response or acknowledgement back from the other person. This doesn’t mean that that person isn’t interested in engaging with you. Here are 3 tips we provide on the podcast to communicate with people that have a developmental disability:
1) Be patient
2) Be sincere
3) Ask how to best communicate with the person
Bill has shared, we need to learn how to slow down. A fast pace verbal world isn’t the world that Bill lives in. Bill gives others the gift by providing them to slow down and operate at his frequency.
Bill Hiltz’s Advocacy Work
Bill’s seizures have such a severe impact on his energy that he has forgone his recreational activities, such as horseback riding, and uses his energy to solely focus on his advocacy work.
Bill envisions a world where we are seen as we who we are, not for what is different. Bill shares, “People have been excluded for so long, which means people see the difference first. When people we are truly included others get to experience who we really are.”
Bill has started the “Walk a Mile in My Shoe” project (seen in the blog cover photo) where he invites people to acquire a disability, (for example loss of sight, hearing, or physical ability), and walk beside him to experience what it is like to live with a disability for a short amount of time. Bill’s theory is that the experience will lead to understanding, which will lead to change.
You can support Bill by visiting his website, or participating in/ sponsoring one of his events. The proceeds go to the organization Reach for the Rainbow, which provided Bill with camp experiences as he grew up.
Bill shares his wisdom with us in his powerful poem, titled 'Understanding People'
UNDERSTANDING PEOPLE
A SET OF STANDARDS BY WHICH TO JUDGE
TO THEIR FRIENDS, THEY GIVE A NUDGE
WHEN THEY SEE ME COME THEIR WAY,
THEY STOP AND WALK THE OTHER WAY
OR EVEN WORSE, THEY STOP AND STARE
AS IF I'M STUPID AND UNAWARE.
IF ONLY THEY COULD KNOW, THAT I CARE;
HOW PEOPLE VIEW ME--IT'S JUST NOT FAIR!
I FEEL THE VERY SAME AS OTHERS DO,
THEY SHOULD TRY AND WALK IN MY SHOE.
LIFE'S NOT EASY, WHEN THE BODY THAT YOU OWN
WAS GIVEN TO YOU BROKEN-DOWN.
THEY MAY BE MEAN; THEY MAY BE CRUEL; THEY MAY BE BAD;
BUT MOST OF ALL...THEY JUST DON'T UNDERSTAND.
WITH SOME TIME AND SPECIAL GUIDANCE;
WE CAN HAVE A GREAT ALLIANCE.
FOR AN HOUR, OR FOR A DAY;
WE ALL NEED FRIENDS ALONG THE WAY.
SO WHEN YOU SEE ME COME ALONG
TRY NOT TO FOCUS ON WHAT IS WRONG;
I AM A PERSON JUST LIKE YOU,
WHO NEEDS AND DESERVES A GOOD FRIEND TOO.
JUST WALK BESIDE ME STRAIGHT AND TALL
AND BE THE FRIEND THAT I CAN CALL
WHEN I AM LONELY AND AFRAID.
JUST REMEMBER WHAT I'VE SAID:
ALL YOU NEED IS TO UNDERSTAND;
DO NOT JUDGE JUST TAKE MY HAND.
- Bill Hiltz
1998
I thank Bill, Joyce, and Arn for coming on the podcast to share their story and insights!
Love & Respect,
Eric
Resources:
Walk a Mile in my Shoe: Video: Click Here
Walk a Mile in my Shoe Website: www.inmyshoe.ca
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Wednesday Sep 06, 2017
Wednesday Sep 06, 2017
In this week’s podcast/ blog our featured guest is Jeff Dobbin, Executive Director of Partners for Planning (P4P) in Toronto Ontario. Jeff and I discuss the idea of creating a culture of possibility for people with disabilities, why planning and intentionality is so important, the three most important building blocks to think about when getting started with planning, and the resources that P4P provides to help you create an incredible ordinary life.
P4P, an affiliate of PLAN BC and a member of the Ontario Independent Facilitation Network (OIFN), is a family driven organization that started in 2009 to create resources and community supports for families caring for a relative with a disability. They developed the P4P Planning Network, which is an online resource that was created for families across Ontario, but is accessed by people across the world!
The online tool provides valuable information on six key areas; life planning, building relationships, work and contribution, legal and financial planning (RDSP), creating a home of your own, and supports.
P4P is also very well known for the webcasts that they produce on these six areas where they engage in thoughtful discussions with experts, and take live questions from the audience. They host approximately 40 free webinars per year and you can check out their upcoming webinars on the planning network home page.
The P4P website also hosts a doc zone – short documentaries profiling short video stories to help us learn what is possible and a professional services directory that can help you find professionals with disability expertise. P4P also published the book titled ‘Safe and Secure’, by Al Etmanski. They are currently updating Safe & Secure and it will be available on the Planning Network this fall.
All resources on the Planning Network are available at no cost.
The Culture of Possibility:
On the podcast, Jeff shares, “If people that haven’t had a lot of opportunity to be involved in their community - for example (they have been) in segregated schools, or a congregated program the whole idea of participating fully as a citizen is an extreme idea for many people. So, one of the things we do at P4P is share stories of hope and possibility to help people realize that people with disabilities can contribute and live full and unique lives.” (These stories are told on the webcasts, and in the doc zone.)
Planning Enables Possibility:
On the podcast Jeff shares, “What many families will tell us is that very little happens unless their family is intentionally involved in directing things. I have 3 kids, and they have more or less figured out their own lives – they have their own jobs, and financial resources and they have moved out, but I am fully aware that doesn’t always happen when there is a disability involved. Also, with all the waitlists in Ontario you can’t sit back and wait for the government to provide all the supports you need. We also encourage families to be proactive because of the individualized funding that has become more available, and because of a move toward community based approaches. Families have an opportunity to create incredible things around work, contribution, and relationships.”
3 Things to Consider When Starting Your Planning:
On the Podcast Jeff shares:
1) Create a Vision. Think about the life you would like to help your son or daughter create. What is important? What is possible? Don’t be afraid to dream.
2) Building Relationships. Who will be there for your sons and daughters when you can no longer care for them? Don’t be afraid to invite others into your life and your son’s and daughter’s life. (Eric: Building relationships has had a huge impact on my sister’s life, but also my mother’s life – as she feels more supported. This is something that an independent facilitator or coach can support with. To learn more about independent facilitation you can listen to episode 3, ‘Independent Facilitation and Support Circles Enriching lives’, and also check out the Ontario Independent Facilitator Network (OIFN) website.
3) Financial Resources. Access the financial resources that are available to you to support making your vision a reality. In Canada, you can open an RDSP if you are eligible for the disability tax credit (DTC). For example, if you open an RDSP at the age of 5, and you qualify for grants and bonds fully, at age 35 you would have a $350,000 asset and over a lifetime $1,000,000 asset. This type of asset is a life changer. Check out the P4P learning center to learn more about the RDSP.
I thank Jeff for coming on the podcast/ blog to share the message of creating a culture of possibility for people with disabilities, and for educating us on the resources the P4P team has created to help us live into the vision we create for ourselves and our loved ones.
If you enjoyed this blog/ podcast Subscribe to our mailing list and get a new episode every week!
Love & Respect,
Eric
Resources:
Partner's for Planning (P4P) Website: Click Here
Ontario Independent Facilitation Network (OIFN) Website: Click Here
The Art of Belonging (Ted Talks Inspired): Click Here
Contact Jeff Dobbin: jdobbin@p4p.ca
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Click Here To Listen on iTunes
Tuesday Aug 29, 2017
Tuesday Aug 29, 2017
We welcome Janet Klees back to the podcast/ blog this week discuss building natural relationships, bio medical approaches to well-being, and the different approach her organization, Durham Association for Family Respite Services, takes to supporting families. Janet has been involved in the lives of people with disabilities, their families, and allies in community for over 30 years. She is the author of three books which are directly rooted in her experience with the Deohaeko Family Support Network, (We Come Bearing Gifts; Our Presence has Roots; Deohaeko Decades) and which are now sold around the world to present the unique options of this family group.
So how is Durham Association for Family Respite Services different? Janet explains that often a family’s first question is: “Can I pay you to do that for me?”. Janet’s answer is: “Well no. But I will teach you, and give you practical supports along the way.” The organization believes so strongly in the approach of empowering individuals and families to make their own choices and keeping control of their lives that they are changing their name to the Durham Association for Family Resources and Supports.
The organization started 35 years ago as a family respite organization, and has since evolved to focus on full life planning, and helping families to think about what a good life is. The organization is grounded in Social Role Valorization (SRV) methodologies and some of the services they offer are listed here. I am listing these services for you because the organization frequently hosts free workshops that you can attend, and they are open to having a conversation with you – even if you are from outside of the Durham Region.
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Facilitation and planning; helping people imagine what a good life is, creating a plan and putting the plan into action.
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Support recruitment; helping people recruit good support people, and providing a minimum a one day training to make sure they understand a SRV style of support.
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Administrative support; templates and forms to make hiring support easier.
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Free Training; workshops for families and supporters to learn what has worked to help people with disabilities create a good life.
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Family to family learning; families get together to talk about themes, such as housing and bio medical (non-medication) approaches.
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Brokering and financial supports; helping families by doing the administrative functions with individual funding dollars.
Building Context for Relationships
BCR is a Strategy that was figured out while working with the families of Deohaeko Family Support Network. The parents were very clear that there was need to have relationships in their son’s and daughter’s lives. The group looked at what they were doing right, instead of what they were doing wrong, and this pattern emerged. What they noticed is that relationships had evolved between people with a disability, and people that do not have a (visible) disability.
The Deohaeko Family Support Network had taken a social role valorization (SRV) approach. Janet provides an overview of SRV:
“The SRV framework says that human beings are very judgmental by nature. We make quick judgements about whether you are like me, or you are weird and different. We can take this human tendency and use it for the good by developing positive roles, such as the Blue Jays fan, the dog walker, etc.. This strategy has helped people create positive roles, and the roles are like a glue. In the role you end up meeting other people who see you in a positive way, and those people end up being open to a different kind relationship in your life. We don’t group people together – when we group people with a disability all (other) people see is the disability. They don’t see the person for who they are and the positive roles they have. Often, families haven’t thought about their son or daughter as a contributing member. We haven’t thought about what son or daughter’s job might be.”
Janet provides a larger overview of SRV in this blog.
BCR: A 4-Part Strategy to Create Situations Were Relationships Are More Likely to Arise.
Janet explains:
1) Find ordinary places where people share your interest. Follow the interests of the person and think about where other people are that are interested in your interest. For example, if your interest is dogs other people interested in dogs are at: the dog park, dog training, walking dogs, dog clubs, stray dog associations, etc.. We are looking for typical and ordinary places in community, not places segregated for people with a disability.
2) Go to the same place frequently. To build relationships you need to be among the same people regularly. Pick one place, use your 1 to 1 support to support, and be there often (ex. Once per week).
3) Find a way to contribute. You want people to have a role in those places in community. So often people with a disability are just spectators. If you look at a music festival most are just spectators, but there are so many opportunities to have a role as a volunteer (ex. free samples, filling water bottles, assistant to the golf cart driver). This gives the person a role, and makes relationship easier.
4) Other people have to be present. Supporters are a bridge to relationships with others, and they need to play a role in facilitating relationships. The paid support person can be looked at as the friend. They are being paid and likely will not be there for that person’s entire life.
BCR In Action:
On the podcast Janet shares several stories of how people have used the BCR strategy to build relationships. You can listen to the podcast to hear them all.
Paraphrasing from the podcast, Janet shares Johnathan’s story:
“Johnathan has a small shredding business that he takes it into work places. He was working at the local police station, and really enjoyed it. He felt like he was important, and he felt like he belonged. That police station was closed down, but hey really valued Johnathan so he was invited to the big regional police station to continue his role. After 3 weeks at the regional police station Johnathan said he didn’t want to go anymore. They had put him in a backroom alone to do his shredding, and he didn’t have his relationships anymore. The shredding business was just a vehicle for relationships. When the relationships weren’t there, he no longer wanted to work. They talked to the police station, and Johnathan moved to a room where he was with people and he enjoyed his job again – because of the relationships.”
Bio- Medical (non-medical) Approaches
In a recent study, led by Yona Lunsky, psychologist at Centre for Addiction and Mental Healthfound that thousands of people with down syndrome, autism and other developmental disabilities are being prescribed anti-psychotic medication despite a lack of evidence that the drugs actually help them. (Reference: Toronto Star)
This highlights the importance of thinking about bio-medical approaches to well-being for people with disabilities. The Durham Association for Family Respite Services has started a family group to discuss this, and they are learning about the impacts of diet, exercise, and mindfulness (of supporters) as alternatives to medication. In my opinion, these are common sense approaches that can be explored at little cost that can get down to the root cause of symptoms or behaviors that a person is experiencing. Peter Marks of Conscious Care focuses in this area, and you can find additional resources on his website. We are hoping to have Peter on an upcoming episode to learn more about these approaches.
I thank Janet for coming onto the podcast and sharing her experience in helping people with disabilities to build relationships, and for getting us thinking about non-medical approaches to well-being.
If you enjoyed this blog/ podcast Subscribe to our mailing list and get a new episode every week!
Love & Respect,
Eric
Resources:
Purchase These Books to Learn More Lesson's from Janet Klees:
"We come bearing gifts" by Janet Klees
"Our Presence has roots" by Janet Klees
Free learning events In Durham Region: Click Here
Durham Association for Family Respite Services Monthly newsletter: Click Here
Housing website: imagininghome.ca
Peter Marks: Conscious Care
Contact Janet Klees: janet@legacies.ca
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Tuesday Jul 18, 2017
Tuesday Jul 18, 2017
David Roche calls himself an inspirational humorist, who has a facial difference. The word inspiration can be viewed as a dirty word in the disability world, as many stories are told and consumed as 'inspiration porn' -inspiration calling on the bias of a person's disability. David however, provides authentic inspiration. We are automatically drawn to the difference David wears on his face, and he uses this difference to inspire us to look within ourselves to find our own inner beauty and strength.
On the Empowering Ability Podcast David tells us that, every time without fail when he orders his old-fashioned donut, and a double double coffee from Tim Hortons the server brings him back a cup of tea and no donut. When meeting someone for the first time they are completely absorbed in the visual. So absorbed that they don’t ever hear him.
When David speaks to audiences and meets people for the first time he encourages them to ask about his facial difference. He has found it as a useful strategy for him to get it out of the way. David was born with part of his mandible (lower jaw) missing, and visible swollen veins on the side of his face. By calling out his difference it allows him to clear out the space for himself, and allows him to be vulnerable and authentic.
Paraphrasing from the podcast David shares, “I have learned that everyone feels disfigured to some degree. Everyone caries a fear inside them that something is wrong with ourselves. In our western culture, everything is linked to our appearance, and women have to carry that more than men do. We all carry a little spot inside of us where fear and doubt resides - if we don’t deal with that then we are prey for the predators. I have learned how to deal with that feeling inside myself. I have learned some life lessons that you need to know, because if you don’t deal with that fear that is when the predators get you.”
For David, his face is his gift. He's had to find his beauty inside, and he feels that it is his purpose to help other people find their inner beauty.
David offers this advice to find your inner beauty:
“When you look in the mirror that is not you, that is how other people see you. So when you look in the mirror do this: don’t go looking for all your little flaws, and all the things that are wrong with you. Look in your eyes and love yourself, and smile and say good morning, and say how wonderful you are. If you look in the mirror and think that is you, you’re wrong. Because the real you is, as Jean Vanier says, love and community. The real you comes out with other people, and it comes out in the form of love. You have to find your inner George Clooney. So when you look in the mirror every morning lower your voice and say, ’Hey looking good this morning!’”
David and his wife do a program called, ‘Love At Second Sight’ about appearance and acceptance and you can watch their short film at loveatsecondsight.org. Also, if you are interested in learning more about David and his story pick up his book, ‘The Church of 80% Sincerity’.
David leaves us with his favorite quote from Jean Vanier to reflect on:
"There is a revolution going on. We are beginning to realize that everyone, every human being is important. We are beginning to see that every human being is beautiful. At the heart of this revolution are not the powerful, the wealthy or intelligent. It is people with disabilities who are showing us what is important - love, community and the freedom to be ourselves."
-Jean Vanier
Our mini-series on housing for people with disabilities is continuing so go ahead and Subscribeto the mailing list to get all 6 episodes sent directly to your inbox!
Love & Respect,
Eric
Resources:
Website: http://www.davidroche.com/
Contact David Roche: Click Here
David's Book: Click Here
David's Film: loveatsecondsight.org
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Click Here To Listen on iTunes
Monday Apr 17, 2017
Monday Apr 17, 2017
Website: www.bobrumball.org
Contact: Click here
Phone: 905-878-4932
Location: Milton, Toronto, Parry Sound, Barrie - Ontario, Canada
Monday Apr 10, 2017
Monday Apr 10, 2017
- Discover social capital
- Learn why social capital is important (for everyone)
- Learn the 4 stage framework to increase an individual's social capital
How to contact Al Condeluci:
Website: http://www.alcondeluci.com/
Contact: http://www.alcondeluci.com/contact/
Location: Pittsburg PA, USA
Website: http://liveworkplay.ca/
Website: https://keenanwellar.wordpress.com/
Contact: http://liveworkplay.ca/contact-us/
Phone: 613-702-0332
Location: Ottawa, Ontario, Canada
Resources:
Research Study - Canadian Journal of Disability Studies: 'Somewhere to live, something to do, someone to love: Examining levels and sources of social capital among people with disabilities' Click Here
Monday Apr 03, 2017
Monday Apr 03, 2017
- Discover family networks
- Learn why families are joining family networks and the benefits they are getting
- Learn how a mentor/ mentee relationship work
How to contact the Waterloo Region Family Network team:
Website: https://wrfn.info/
E-mail: Katie (family resource coach): katie.galashan@wrfn.info, Sue Simpson: sue.simpson@wrfn.info
Location: Kitchener/ Waterloo, Ontario, Canada
Resources:
Evening of Elegance Event: https://wrfn.info/an-evening-of-elegance/
Family Alliance Ontario: https://family-alliance.com/index.html
Monday Mar 27, 2017
Monday Mar 27, 2017
#004 - Employees with a Disability and Employers Collaborate for Workplace Success, with Laura McKeen, of Cohen Highley LLP Lawyers
How to contact Laura McKeen and Cohen Highley LLP Lawyers:
Website: www.cohenhighley.com
E-mail:mckeen@cohenhighley.com
Learn more about Laura: http://cohenhighley.com/lawyers/laura-m-mckeen/
Location: London, Ontario, Canada
Resources:
8 Myths About Hiring Employees with Disabilities, by the Ontario Chamber of Commerce -http://www.occ.ca/emerging-stronger-agenda/8-myths-about-hiring-employees-with-disabilities/
Business Benefits of Accessible Workplaces, by the conference board of Canada - http://www.conferenceboard.ca/documents/6264_accessibleworkplaces_br_av.pdf
Partnership Council on Employment Opportunities for Persons with Disabilities Report, published by the Government of Ontario - http://www.conferenceboard.ca/documents/6264_accessibleworkplaces_br_av.pdf
Love & Respect,
Eric
Tuesday Mar 21, 2017
Tuesday Mar 21, 2017
003 - Independent Facilitation and Support Circles Enriching Lives, with Joanna Goode, Director of Facilitation Wellington Dufferin
What you will get in this episode:
-
Discover Independent facilitation and support circles
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What is the investment? Cost? Benefit?
-
Hear success stories with facilitation and support circles
- Learn how to start working with an independent facilitator
How to contact Joanna Goode and Facilitation Wellington Dufferin:
www.facilitationwd.com
Phone: 226-326-0916
E-mail: info@facilitationwd.com
https://www.facebook.com/FacilitationWellingtonDufferin
Resources:
Ontario Independent Facilitation Network: http://www.oifn.ca/
If you are outside of Ontario Google 'Independent Facilitation + your location' to find local facilitators.
Tuesday Mar 21, 2017
Tuesday Mar 21, 2017
002 - The 5 Life and Financial Stages for Families With A Disability, with Tom Mahoney, of Freedom 55 Financial
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Hear Tom's journey as a parent of a son with autism.
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Learn the financial life stages model of a family with a child with a disability
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Discover the keys to financial success
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Learn questions your family should consider at every life stage
Note: Before the recording of this episode I didn't have an understanding of the impact of language like 'special needs' families. Since this episode I've used and promoted language that promotes ability and capability. The spirit of intent in using the term 'special needs' families in this episode comes from a positive place and the information in this episode is extreemly valuable to families and individuals with a disability.
How to contact Tom Mahoney:
Email: tom.mahoney@f55f.com
Resources:
Specific products were not discussed in depth in this episode, but here is a great resource on the Registered Disability Savings Plan (RDSP) in Canada.
http://www.rdsp.com/
Tuesday Mar 21, 2017
Tuesday Mar 21, 2017
#001 - The movement to individualized support, and accessing developmental support services, with Keenan Wellar, Co-Leader of LiveWorkPlay.
What you will get from this episode:
-
Learn how LiveWorkPlay came to be
-
The latest on the trend toward citizenship and individualized support
-
Learn how to access support from developmental support agencies (in Ontario, Canada)
How to contact Keenan Wellar and LiveWorkPlay:
613-702-0332
Resources:
Developmental Services Ontario (DSO) - https://www.dsontario.ca/
From Presence to Citizenship Video
The video which was shown at the start of the Learning Exchange highlighting stories from the project partner organizations is available on the Learning Community and on YouTube. Please feel free to share this video with your Board, management team, staff, volunteers, family and friends!
The YouTube link is: https://www.youtube.com/watch?v=ZWd5wlrrw4w
Wednesday Mar 15, 2017
Wednesday Mar 15, 2017
000 - Podcast Introduction & Eric's Story, with your host, Eric Goll
What you will get from this episode:
- Hear my story, featuring my mom & sister!
- Learn why I am creating the podcast
- Learn what's in the podcast for you
- If you want to learn more about me, take a listen!
How to contact Eric Goll and Empowering Ability:
www.empoweringability.org
Facebook Community - Join the conversation and ask questions about the podcast!